The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Friday, July 22, 2011

A couple of months ago, the following tweet appeared in my Twitter timeline:

Minutes later, this tweet appeared:

As I confirmed afterwards, Helen had quickly received, via Twitter, several jokes as well as links to humorous videos.

Roughly two weeks later, a more serious tweet appeared:

This one was followed -- again, only minutes later -- by this:

Short supportive comments had also appeared quickly on Heather's FaceBook page, on which Heather's tweets are automatically posted.

The next day, Heather tweeted:

The Twitter accounts of both Helen and Heather had lots of followers: ~9750 and ~5750, respectively (at the time the above occurred); and Heather had ~1950 Facebook friends. And writing a tweet or a short FaceBook comment in response may not have required a great deal of effort. Yet, I still find it amazing -- amazingly wonderful -- that several people, including some who Helen and Heather did not personally know, responded immediately to these two people in their time of personal need.

For most who responded, the subsequent tweets of thanks were probably important and probably adequate.

Two years ago, a related but grander scenario played itself out after David Armano opened his home to a Romanian immigrant and her three kids (one with Down's Syndrome). The woman -- Daniela -- had lost her home due to an unpaid mortgage, was divorcing her spouse after years of abuse, and had nowhere to go with her children other than to a group shelter. David appealed to the followers of his very popular blog and Twitter account to help him raise $5,000 via ChipIn to enable Daniela to secure an apartment. In less than 24 hours, $12,000 had been donated; ultimately, nearly $17,000 was raised via the monetary contributions of 545 people. Non-monetary donations included furniture and toys.

During this effort, the already heavy traffic to David's blog exceeded 10 times what was normal, and so many people tweeted, retweeted, and blogged information about the fundraiser that Daniela's name quickly rose to the top of Twitter's list of trending topics and, according to Google's PageRank, to the 8th spot of the most popular search results out of 42 million.

David issued emotional words of thanks on behalf of himself, his wife, and Daniela via a video (see "The Spirit of Social Media"), his blog, and Twitter. Daniela probably knew none of the contributors personally, and, undoubtedly, David knew only a few.

Many people (including, coincidentally, Helen Walters) commented about what had happened afterwards. Almost all expressed marvel, praise, joy, and/or gratitude directed towards some combination of David, the contributors, humanity, and social media. Some (e.g., David Griner) provided analyses of why the fundraiser was so successful.

However, in this case, expressions of thanks were not enough, at least not for everyone. Following the fundraiser, one commentary stood out from most of the rest -- a blog posting by Scott Henderson entitled, "I Gave $10 to David Armano to Help Daniela and Now I Regret It." Questions regarding authenticity, accountability, scope of effect, and contributor motivations prompted Scott's regret. "The #1 Thing You Need to Know From This Post: Raising money for someone's private benefit does not improve the social good; it just proves we are all selfishly altruistic."

Since then, numerous fundraisers of a related nature have been facilitated by social media with varying degrees of success. One fundraiser in particular captured my attention -- a fundraiser for me held earlier this year. Like the fundraiser for Daniela and her kids, it, too, was successful. In less than two days, more than the fundraiser goal of $10,000 had been donated; ultimately, $20,250 was contributed before the fundraiser ended. And there were additional donations, including food, use of a FasTrak Toll Tag, research on my behalf, a subscription to a health information website, admission to good movies, offers of additional assistance, and, importantly, genuine emotional support.

During this effort, daily visits to my "nightmare" blog rose from an average of less than 20 to a maximum of 1,050 (which happened on the fundraiser's second day). Encouragement to contribute was tweeted and retweeted many times by more than 100 Twitter accounts (most during the fundraiser's initial week), and I saw several similar postings on Facebook (though I had no way of determining the total number). Without question, the numbers paled in comparison to those recorded during the fundraiser for Daniela; yet...

As this was happening, I was overwhelmed emotionally. Tears would often stream down my face when I checked the fundraiser's status, saw the relevant tweets and retweets, and read the comments of those who donated. (The fundraiser ended on May 11, but you can still access the fundraiser webpage, complete with comments and donation amounts.) Jonathan Arnowitz, a key member of the calvary that had arrived, was similarly affected as reflected in a posting on his Facebook wall. I thanked contributors via Facebook, thanked all (re)tweeters directly via Twitter, thanked a subset of contributors in person, and, having received a list of email addresses of contributors who provided an email address via the fundraiser webpage, will thank a larger subset directly after I post this piece to my blog. I know many of the contributors personally, but not all.

Note that while my life was being torn apart two years earlier, I was repeatedly told that I was inadequately thankful. As my inability to speak and function normally was being belittled and mocked, and as I was being yelled at for all sorts of perplexing reasons, including my being "negative" (i.e., objecting to or even just questioning what was being done "for" me), I was being told that I was not saying "thank you" enough. Unfortunately, I found myself in similar situations subsequently.

In some situations, words of thanks are simply inappropriate. In other situations, words of thanks are appropriately not enough.

In some situations, people won't give unless they have already received (as was said to have been true for many in the case of the Daniela fundraiser, since so many had received much from David's excellent blog and tweets). In some situations, people will give but will then desire or expect to receive something in return.

Sometimes what is desired or expected in return is inappropriate -- sometimes very inappropriate, as, unfortunately, I experienced.

In the wake of the Daniela fundraiser, "selfish altruism" was proclaimed to be inappropriate, as referenced earlier. Recently, Akhila Kolisetty wrote, "We cannot donate or volunteer just to feel good about ourselves. Social justice will only come if we ... give up any desire to feel warm and fuzzy inside..."

To encourage more giving, some homeless people on the streets of San Francisco hand out a copy of Street Spirit -- a publication about "homelessness, poverty, economic inequality, welfare issues, human rights issues and the struggle for social justice" -- in exchange for $1. Interestingly, Evan Hamilton suggests converting that publication into "a product that we want to buy. Appeal to both our need to seem like a good person AND our personal desire for entertainment. Make Street Spirit an all-comics newspaper and the homeless will make a lot more money." (Those who frown on giving money directly to the homeless regardless of what is received in return should take a look at an article in The Economist entitled, "Cutting out the middle men.")

To encourage more giving to fundraisers facilitated by Kickstarter, Alissa Walker recommends doing what Frank Chimero did to raise more than four times his goal of $27,000 to enable him to write and publish a book. One key to the success of any fundraising effort via Kickstarter is probably the nature of the commitments made in return for donations. According to Frank, "if you do it right, it's less about asking people to give you money..., and more about saying 'I'm about to go on this journey. Do you want to come with me?'"

Comments made by those who contributed to the fundraiser held for me via GiveForward suggest that, in many cases, people gave because of what they and/or my profession(al community) had already received from me over the years. Some gave because they were inspired by my courage and fortitude.

Many gave expressing hope that, in response, I would achieve "a complete recovery -- physical, financial, (professional,) and spiritual/emotional." (Indeed, I'm working on it!) Some gave hoping that, in response, I would work to address the problems that nearly destroyed my life and have (nearly) destroyed the lives of others; as one contributor put it:

"When you get better, you will help all of us get better. Time to fix that damn health care system, and you can lead that calvary."

(Those who follow me on Twitter or are my friends on Facebook will have seen evidence that such a goal is among those that have been receiving a considerable amount of my attention during recent weeks. See also my blog posting entitled, "Moving forward.")

A few weeks ago, I walked by someone apparently homeless and in obvious need shivering in a doorway on a street in San Francisco. As I walked by, he said "hello" and wished me a good evening. Though I, too, was homeless and in need, I felt the weight of a solitary dollar bill in the right front pocket of my pants. After having walked a half block further, I turned, took that bill from my pocket, returned to the man, and gave him the dollar. He took the bill, examined it carefully, put it in his pocket, and resumed his shivering in the cold. He did not say thanks, but, in his case, I did not care.

However, to those of you who have given to me what I have needed (and without inappropriate expectations regarding what you are to receive in return), I say again -- and will say again and again and again -- my dearest thanks.